COVID-19 resource: Recognizing difficult breathing and strategies for supporting comfort

image of difficult breathing page 1One of the challenges health care providers are facing with COVID-19 is managing breathlessness or shortness of breath in infected patients.

For some caregivers and health care professionals, it may not be logical to consider applying palliative care principles and practices for managing difficult breathing when supporting people with breathlessness due to COVID-19. Know that applying palliative care principles and practices does not indicate that the person with COVID-19 is dying imminently. Repeat: Applying palliative care principles does not mean that a person is dying imminently. It does, however, mean that you may help the person to feel more comfortable while they are ill.

We’re offering an excerpt from the textbook, Integrating a Palliative Approach: Essentials for Personal Support Workers, titled “Common Symptoms – Difficult Breathing” to assist you when supporting a person with a COVID-19 infection.  This section describes key signs indicating a person is experiencing breathlessness and discusses comfort measures for supporting a person experiencing difficult breathing. We hope that it helps you as you support people ill with COVID-19.

 

Enter your information below to receive instant access to the text excerpt, “Common Symptoms – Difficult Breathing.”

CAUTION * For some people with COVID-19, difficulty with breathing progresses very quickly and becomes severe. When you recognize that a person is experiencing any difficulty with breathing, regardless of severity, connect first with your local health care professionals for guidance, assessment and treatment options.

This resource should not be considered a replacement, substitute or alternative to seeking appropriate and timely medical care.

Get access to our resource, Common Symptoms: Difficult Breathing

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Preparing for COVID-19 because it IS personal

The COVID-19 virus is coming to a home nearby. How near? And how serious? Even if the curve is flattened, the reality is that people will get sick, and people will die. The deaths could include me or Ted. That is a reality.

This morning my dear colleague Elizabeth Dougherty shared an EXCELLENT article, This Pandemic is Personal, by Dr Ira Byock.

Ira writes that he has graduated into a high-risk group of “elderly people”. (When I checked last, I was 23 and Ted was 29, but we sneezed a few times, turned around, had a wonderful family and some great adventures, and voila, Ted is joining that group of “over 70” in the next few years and I am just a bit behind him.) He writes that 1 in 5 of elderly people who become infected do not survive.

I may not be able to control if I die, but I can control what I do to prepare. 

When I teach, we sometimes discuss the pros and cons of a sudden death vs a steady more predictable decline, a stuttering up and down decline, and a long slow lengthy decline. There is usually a group of people who like the idea of a sudden death. Then the discussion follows that sudden death is difficult for family.

On January 23, 2020, our 30 year old son, Geordie Murray, died a sudden accidental death. I know only too intimately the things that I wish we had done, could have done, would have done, had we known in advance that he was going to die. I know only too well that there are things that Ted and I can do now to decrease the burden on our loved ones, and increase their likelihood of healthy grieving, if we do die “suddenly”.

This time of social hibernation provides us with opportunities to prepare. And looking in the face of death may enrich our living.

This afternoon, inspired by Ira Byock’s article, Ted and I will sit at the table and review our will, organize our papers, share our passwords. We will talk about how we can best connect with family and friends. Then we will go for a walk on our country road and discuss ways to stay healthy.

Please read the article by Dr Ira Byock and then return and comment below on this blog. We need to talk about this.

With warmth, a great big virtual hug,

Kath

I could certainly be one of the many tens of thousands of Americans who will die in the next few months…. mainly because I’ve graduated into a high-risk group.

While all adults are at some risk, Covid-19 is far more lethal to elderly people. I’m 69 and my wife is 73. At our ages, upwards of one in five people who become infected do not survive. … Given the anticipated shortage of mechanical ventilators – we’ll need between three to 10 times the number available – and the fact that older patients who require mechanical ventilation usually go on to die, triage guidelines will likely not offer advanced life support to people my age.

…Life is a precious gift, but a fleeting one. We live each moment, but just a heartbeat away from eternity…. I go about my days, filled with meetings – now all by video conference – calmly aware that this could be the last month of my life….

My path forward is clear. In the days ahead, I’ll express my love in preparations. As a doctor, I know well what those will entail. I teach this stuff frequently….I can tell you a lot about what happens in real (this) life after we die, and how we can affect what happens.

I explained that since we’re inextricably connected to others, playwright Robert Anderson’s observation applies, “Death ends a life, but it does not end a relationship.” After you die, the people who love you will grieve. They will miss you and go through a range of emotions when they think of you; which they will do often. They may have regrets or satisfactions or both. Thought of in this light, yes, there’s a lot we can do to affect how people live in the wake of our deaths and how we remain in their lives. 

It’s now time to take those lessons seriously. My wife and I will finally complete our “in case of death” file box. We model ours on the one that my mother left for my sister and me. The day after she died suddenly, we found it sitting next to the telephone in the kitchen of her retirement condo. Ours will include our will, the title for our cars, the deed for our house (not copies, the actual documents), our bank account numbers, passwords for financial and social media accounts, along with instructions about what to do with our bodies and how to access the money we’ve set aside to do so.

Our family has started having Byock Family Visit Zoom calls so that we can visit and grow together through this period of social isolation.

I’m also using my confinement to reach out to people I care about but haven’t had a conversation with in years. Mostly it’s to let them know I value our relationship and to reminisce, but also to leave nothing important unsaid. Since no relationship is perfect, it’s a chance for me ask for forgiveness for past mistakes and transgressions. It’s an opportunity to let others know that I forgive them – any misdeeds and hurt feelings are water under the bridge – and to say thank you and I love you.

Buddhist meditation teachers and seriously ill patients have both taught me that in facing death, we can begin to live fully. I’m going to do everything I can to stay safe and survive this pandemic. If I die, I want the people who matter most to me to know how I really feel. To every extent possible, I intend to joyfully celebrate life and the people I love in the very face of death.

Ira Byock, MD, is chief medical officer of the Institute for Human Caring of Providenc

Original article by Dr Ira Byock available here

Is this the perfect time for you to read, review and reflect on dying and the “what-if” questions?

Daily we learn more about the COVID-19 virus. We hear about outbreaks, number of cases and number of deaths on a global and local level. The topic of death is on the table in a very real way.  Death due to COVID19 is a reality for those who are very frail and vulnerable. People living with multiple serious illnesses AKA co-morbid conditions are at high risk. And to share what seems like a secret, whether we die from COVID19 or something else, now or later, we all will die.

So…. if you have the luxury of hibernating and reflecting and are looking for a most meaningful project, I highly recommend that you:

  1. Read Dr Atul Gawande’s book, “Being Mortal”
  2. Review the Serious Illness Conversation Guide
  3. Engage in Advance Care Planning, and
  4. Engage in conversations!

Read “On Being Mortal” by Dr Atul Gawande

Dr. Gawande will help you understand the challenges of dying in a health care system that aims to cure all.

In his book, Dr. Gawande clearly identifies the challenges of dying in a death-denying society. Move this incredible, engaging, easy to read book to the top of your list. It may help you to shift your thinking and see all health care decisions from a different perspective. Consider your health, consider the health of those you care for and care about. What questions does this bring forward for you?

Review the Serious Illness Conversation Guide

Dr. Gawande and team at Ariadne Labs developed the “Serious Illness Conversation Guide” to assist health care professionals to talk with patients and family members about the individual, their illnesses, what to expect, and prepare them to make informed decisions. Read through the guide, consider your own health, the health of those you care for. What questions do you want to ask of the health care team? What do you feel inspired to do/say/consider?

This may lead you to consider, “If I were suddenly to become critically ill, what would my priorities be? My goals? What are my fears about death? What is most important to me”

Engage in Advance Care Planning

Advance Care Planning will help you develop a clearer understanding of what you might want as your health declines, and will help you assign a Substitute Decision Maker who will speak for you and advocate for you, if and when you are no longer able to speak for yourself. Going through the process of your own Advance Care Planning will help you develop a deeper understanding of the challenges and decisions that the person and family must address.

If you are caring for a friend or loved one, work with them to engage in these conversation,  to help them to identify determine the care they want and do not want. You may want to bring in member of the health care team to help facilitate the conversation.

Know that Advance Care Planning conversations are not optional; they are essential. With current technology, it is possible to record the conversations in an audio format as well as written record.

There are many excellent resources to help with Advance Care Planning discussions. Of course, there are the fun “Care Planning Cookies” available  through Life and Death Matters ? to stimulate conversations about care giving preferences.

Michelle Pante and Reena Lazar are cofounders of WILLOW, and offer resources for exploring your    Offer a workbook to help you explore death and what it means to you.

The SPEAK-Up resources from the CHPCA, are part of their Advance Care Planning program. In the US, one of the favorite resources is Five Wishes.  The Chinese American Coalition for Compassionate Care created a card game based on the “Five Wishes” go to “Heart to Heart Care Deck” The card game, like the Care Planning Cookies, stimulates discussion while having fun.

Engage in conversation

Social hibernation does not mean social isolation. As you read, review and reflect, engage with friends, family and community in conversation. Use technology to connect and record your thoughts.

Speaking up now will help you know what you want, will help others know what you want, and will help the health care team to provide care that best honours who you are.

Do you have a favorite resource that you use? Please share!
Do you have a related experience or story? Please share!

Sharing – my birthday surprise from friends who figured that I needed to engage in conversation!!

Thanks to my very very dear friends who decided that the best way to celebrate my birthday was to paint an image of me wearing a thong on my birthday cake! (The artist is WENDI! The co-conspirators are Bonnie and Frankie!)

 

 

 


Cuidar con compasión: es difícil ser familia

Cuidar con compasión: es difícil ser familia

Escrito por Kath Murray

 Se ha escuchado decir a las personas involucradas en el cuidado de las personas en vías de morir:

Cuidar a la persona moribunda es fácil; lo difícil es cuidar de la familia.

El punto a recordar es que las personas responden a la muerte de un miembro de la familia de diferentes mane-ras, lo cual es normal. También es cierto que las maneras en que las personas responden cuando un ser querido está muriendo están fuertemente relacionadas con su historia como familia, incluida la naturaleza de sus relaciones con los demás, la distancia física y emocional que los separa, así como su relación con ellos y las obligaciones existentes para trabajar y así sucesivamente.

Recuerden que los miembros de la familia necesitan de su comprensión, compasión y calidez.

No necesitan que ustedes tomen partido, juzguen o compartan sus opiniones personales. Sean amables. Empaticen. Apoyen. Reconozcan. Informen. Animen.

Puede ser útil recordar lo siguiente:

  • La persona en proceso de morir y la familia son la uni­dad de atención. Mientras trabajan para crear un lugar seguro para que la persona muera, traten también de crear uno para la familia.
  • El estrés y el dolor pueden ser compañeros constantes de una familia. Acepten la amplia gama de respuestas emocionales que varios miembros de la familia experi­mentan y expresan.
  • Respondan a las preguntas e inquietudes, incluso si es simplemente con: “Esa es una buena pregunta. Hablemos de eso”.
  • Proporcionen información precisa de manera oportuna para permitir que los miembros de la familia anticipen cambios, validen lo que ven y participen en el cuidado. La información también puede reducir los temores y prevenir crisis innecesarias.
  • Brinden mensajes que sean consistentes con los del equipo de atención médica. Es difícil tanto para la per­sona como para la familia recibir diferentes mensajes que se contradicen por parte de por diversos miembros del equipo. Si una familia tiene problemas con mensajes contradictorios, hablen con el equipo.